Ending the Waiting Period for Medicare

There are more than five million Americans living with Alzheimer's disease, and up to a half million of these individuals are under age 65 and have younger-onset Alzheimer's or a related dementia. After working full-time and paying into Medicare like all other employed Americans, many of these people lose their jobs before retirement due to the progression of their disease, and no job means no employer-based health coverage. As these folks grapple with the challenges an Alzheimer diagnosis brings to their lives, they must also apply and wait for disability coverage when the illness makes it impossible for them to work. Many people wait years to receive disability coverage. Once disability is secured, people with younger-onset dementia also discover that federal law requires them to wait two additional years after their disability determination to become eligible for Medicare benefits. This is often two years without health insurance when these folks need it most.

I have had the great pleasure of knowing many talented and vibrant people under age 65 with Alzheimer’s disease, many of whom lost their jobs, had difficulty securing disability, and went without medical coverage for years. One example is Kris. Kris was a 55-year-old marketing executive for the convention bureau of a large metropolitan city at the top of her career when she was fired from her job because of her Alzheimer’s disease. She applied for disability and was turned down twice before being accepted into the program. This process took nearly two years. Kris then had to wait another two years before she could qualify for Medicare. She was without medical insurance for four years--four years when she was trying to slow the progress of her disease. This is clearly wrong, and it has to stop. We pay into disability and Medicare so that if we become disabled--if we get Alzheimer’s and can’t work--we will have a means of support and health insurance. Now is our opportunity to help our friends and family members with younger-onset Alzheimer’s receive the benefits they’ve earned.

I urge you to contact members of Congress and tell them to cosponsor the Ending the Medicare Disability Waiting Period Act of 2009 (S. 700 and H.R. 1708). I applaud the action of Minnesota Representatives Betty McCollum, John Kline and Collin Peterson, who have already signed on to co-sponsor this important legislation, and I encourage you to call or e-mail other policy makers to request their support. Phasing out the waiting period for Medicare benefits for people disabled by Alzheimer's disease would reduce the problem of lack of health insurance and high out-of-pocket expenditures for this vulnerable population. It would ensure access to critical health care services that can help to manage the disease and help to maintain independence. (You can read the text of S. 700 at this link--http://www.govtrack.us/congress/bill.xpd?bill=s111-700--and the text of H.R. 1708 at this link--http://www.govtrack.us/congress/bill.xpd?bill=h111-1708.)

Alzheimer's disease poses tremendous burdens on individuals and families, burdens made worse by lack of healthcare coverage. The Alzheimer's Association is grateful for the leadership of Sen. Jeff Bingaman of New Mexico and Rep. Gene Green of Texas, and we urge bipartisan support and swift enactment of this important legislation that provides invaluable health coverage and peace of mind for those with Alzheimer's and other disabling, fatal diseases.

--Michelle Barclay is the Vice President of Program Services at the Alzheimer's Association Minnesota - North Dakota.

Celebrating in North Dakota

Hello from ND! I think it is great that we've started this blog - what a fabulous way for us to connect and share with each other! The successes we have seen in the public policy arena this year are phenomenal and something we should definitely not keep to ourselves.

Our big success in ND was the passage of HB 1043 for Dementia Services. (Read it here: http://www.legis.nd.gov/assembly/61-2009/bill-text/JAHF0300.pdf). The bill will establish a statewide dementia care consultation and community education program, both of which are severely needed, especially in the more rural areas of the state (which is pretty much all of it). I know that everyone who took part in getting this bill passed learned a great deal along the way. We learned that ND government has interesting idiosyncrasies. We also learned that support for this bill was nearly unanimous in both chambers of the legislature and among both parties, Republican and Democrat alike. Alzheimer's disease knows no party lines, demographics, or socioeconomic status. What I learned most, and what I think is vitally important for all of us to remember is something that Margaret Mead said many years ago: "Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has."

So what's next for the ND legislation? The Dept of Human Services will release a Request for Proposals (RFP), probably within the next month, and the Alzheimer's Association will submit a proposal outlining our ideas on the implementation of the program. Cross your fingers that we are granted the contract to fulfill the requirements of the bill!

--Krista Headland is the Alzheimer's Association Regional Center Director for Western North Dakota.